Just curious

[cazz22]

Having just read a post by a teacher who is working with pbc(I am a cover supervisor in a primary school)I was curious to know how many of us with varying stages of Pbc are still able to work and any strategies they have to cope with work and having a home life.any replies please

[cazz22]

Thank you karaliz.im sorry for your extreme fatigue and wish you well for the future.your family sound wonderfully supportive and that counts for a lot I know.i hope you find a less physically demanding job.take care

[Goks]

Hi - well done to all off those with PBC who are able to continue working. I am 64 and have PBC and although I have not been told which stage I have it must only be the beginnings as I do not have many of the symptoms. Not planning on retiring just yet so I will see how long I can work and whether the PBC will progress any further.

[Mcsv]

Im prediagnosis due to negative ama...im a teacher! And i am suffering from fatigue. Plus i have a hard time staying asleep at night. But my fatigue isnt as extreme as other cases I have read about.

Hopefully somebody else will post some advice to help us both out. I go by the spoon theory, but I am so busy I always feel like im out of spoons and have to keep going!

Best wishes!

[Tigger858]

Hi I suffer from severe fatigue and had a very stressful and demanding job. I had to take ill health retirement in the end as I couldn't carry on doing 12-14 hour days. I still have bad days as giving up work doesn't solve the fatigue. My consultant told me that it's really just bad luck to have such severe symptoms, she has patients who are at a far more advanced stage of PBC than me who have virtually no negative symptoms and others like me who's symptoms are severe, albeit that the PBC is at an early stage and responding well to Urso. I have been told I need to manage my fatigue. The one thing I have done is join a gym. I work on the principle that I'm tired anyway so might as well do something that would make me tired. The excercise helps to a point but sometimes I can't manage that either. However I'm fitter than I've ever been and on my good days I feel really well. The only piece of advice I can give you is try to live as normally as possible and when the fatigue is bad you need to rest. Take care x

[susanantovil]

Hi, I was diagnose with PBC 19 years ago and I'm 66. I work at a car dealership and havé for 24 years and generally work 46 hrs a week and yes I get mentally and physically tiered. I find on the week-ends I relax and I mean relax. I put this disease out of my head completely because If you don't the disease will take over and it wins. I refuse to let it win. Just LIVE and enjoy your life. Nobody knows how long we are on this earth so enjoy every minute. Keep smiling :-)))

[cazz22]

Now thatIS good advice susanantovil

Long may you remain active and thankyou

[SC49]

I haven't been able to work since about 9 months before I actually got a diagnosis (more than 2 years ago). It was fatigue and concentration memory problems that got me.

Even before i went off sick, I had struggled really badly for about 3 months - prior to that I can't say that I had any problems at all. I worked hard, did long hours and was also studying part time. On top of that I am a single parent.At first I thought it was just tiredness related to doing too much but after about 3 months I had to concede defeat. I took a few days off work.

After the first episode of sickleave, I went back to work but within a day was floored again. I couldn't do any of the things that we take for granted in my workplace which left me being not only unreliable but also a liability.

Since then I have never been able to conquer the tiredness.

I know however that other people here have found that their tiredness eased for no apparent reason. I wake up every morning thinking 'I hope today's the day' So far though, it has been relentless.

I hope things ease for you or that you find a good way of managing it x

[jilly3209]

I worked full-time after I was diagnosed, after maternity leave I went back to work 3 days a week, I felt fine. In May 2013 I got a new job and although it was full-time I thought I would manage as had felt so good doing 3days. It became apparent quite quickly that I could no longer manage due to fatigue and joint pain, I was coming home every night crying with exhaustion. I have now gone job share and only work 2.5 days a week, this is much better but sometimes find myself nodding off at my desk mid afternoon, will keep going as long as I can, won't let the PBC win!

[cazz22]

Thanks for everyone's replies.a bit scared now.i have no sign of fatigue -yet and I'm shocked how dibilitating it is for you all.probably my only symptoms tho don't know if they're linked to Pbc is painful feet.my consultant says not.what a vile thing Pbc is as it slowly robs you of life.i wish each and everyone of you a health and safe future and please God help find a cure for this condition